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Frustrated


littlestarsmom

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littlestarsmom Newbie

Hi - New here and need some help please!!!

My son is 7 years old. At about 1 year old he became extremely picky. His life pretty much consists of eating bread and not much else. I really feel like it is due to a gluten and/or wheat intolerance. About a year ago we did blood testing. All came back negative. We did the small intestine biopsy. That came back negative as well. The only symptom he seems to have is constipation. He doesn't really complain of stomach pains. He barely eats anything. He is tall for his age and his weight seems about normal. When we went through all the testing a year ago our pediatrician sent us to Children's Hospital to a GI specialist. Since the biopsy came back normal that was all the testing that was done. So I just went on with life and let him continue eating his bread. I don't like the fact that he continues to just want bread. I know there is a problem and feel the bread eating is his way of trying to make himself feel better. I have recently tried taking him off gluten but it has been extremely difficult because he just won't eat much. I guess the purpose of this post is to get advice. I just don't know what to do. Do I just completely get him off the gluten and see what happens or do I go back to our pediatrician and see what else can be done? I just feel so frustrated and just want to cry.

Kim


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ang1e0251 Contributor

Wow, that is a head scratcher!! He would be constipated if all he eats is bread! Maybe you could switch out some of his bread products for gluten free. Granted, no gluten-free bread is going to taste good to him, it just doesn't compare. But if you could get him to eat say muffins, you could make them gluten-free and sneak some good stuff in there like zuchinni or pumpkin. There is a good cookbook about just that by Jerry Seinfield's wife. I can't remember the name but your library probably has it, mine did.

If you can sub out some of his food, without him knowing it, you can see how he reacts to a low gluten diet. See if you think it is helpful to him. Actually, he doesn't seem to be showing the average symptoms I hear about from parents. Usually they report failure to thrive, digestive problems, pain and behavior issues. That doesn't mean he isn't gluten intolerant, it just means you are going to have to dig deeper to find that answer. A positive response to the gluten-free diet is something a dr might hang his hat on.

Good luck and let us know how it comes out.

tarnalberry Community Regular

if he's mostly just eating bread, is he getting much fiber and/or fat?

honestly, it is not quacking like a celiac duck and I might look into what else might be causing the constipation.

nu-to-no-glu Apprentice

Wow...this sounds familiar to me. My son is 20 months and I suspect celiac disease. He, like your son, started only wanting "carbs" at about 1 years old (he ate all types of food before). He has diarrhea and gas and gets very rashy. Do you or his dad have any gluten issues? That could be a good indication for starters. I've seen the Seinfeld cookbook called "deceptively delicious" recommended by the previous poster, but its got recipes for meatloaf, soups, etc. That he won't even touch. We've been buying V8 splashers to sneak in some veggies if you could get your son to drink that? Just a little off-topic suggestion.

I know that with my issues, I crave carbs. I read somewhere that sometimes, our bodies crave what is making us ill. Sorry I don't have a more difinitive answer, but I've suspected the same with my child if it helps. Keep me updated on what you find and I'll do the same.

Juliebove Rising Star
Wow...this sounds familiar to me. My son is 20 months and I suspect celiac disease. He, like your son, started only wanting "carbs" at about 1 years old (he ate all types of food before). He has diarrhea and gas and gets very rashy. Do you or his dad have any gluten issues? That could be a good indication for starters. I've seen the Seinfeld cookbook called "deceptively delicious" recommended by the previous poster, but its got recipes for meatloaf, soups, etc. That he won't even touch. We've been buying V8 splashers to sneak in some veggies if you could get your son to drink that? Just a little off-topic suggestion.

I know that with my issues, I crave carbs. I read somewhere that sometimes, our bodies crave what is making us ill. Sorry I don't have a more difinitive answer, but I've suspected the same with my child if it helps. Keep me updated on what you find and I'll do the same.

I don't personally get that because I can't stand feeling sick so I avoid things that have made me feel sick. I do know of people though who say they crave what their allergens are. I guess we're all different.

  • 3 weeks later...
gspoongrl Newbie
Hi - New here and need some help please!!!

My son is 7 years old. At about 1 year old he became extremely picky. His life pretty much consists of eating bread and not much else. I really feel like it is due to a gluten and/or wheat intolerance. About a year ago we did blood testing. All came back negative. We did the small intestine biopsy. That came back negative as well. The only symptom he seems to have is constipation. He doesn't really complain of stomach pains. He barely eats anything. He is tall for his age and his weight seems about normal. When we went through all the testing a year ago our pediatrician sent us to Children's Hospital to a GI specialist. Since the biopsy came back normal that was all the testing that was done. So I just went on with life and let him continue eating his bread. I don't like the fact that he continues to just want bread. I know there is a problem and feel the bread eating is his way of trying to make himself feel better. I have recently tried taking him off gluten but it has been extremely difficult because he just won't eat much. I guess the purpose of this post is to get advice. I just don't know what to do. Do I just completely get him off the gluten and see what happens or do I go back to our pediatrician and see what else can be done? I just feel so frustrated and just want to cry.

Kim

gspoongrl Newbie
Hi - New here and need some help please!!!

My son is 7 years old. At about 1 year old he became extremely picky. His life pretty much consists of eating bread and not much else. I really feel like it is due to a gluten and/or wheat intolerance. About a year ago we did blood testing. All came back negative. We did the small intestine biopsy. That came back negative as well. The only symptom he seems to have is constipation. He doesn't really complain of stomach pains. He barely eats anything. He is tall for his age and his weight seems about normal. When we went through all the testing a year ago our pediatrician sent us to Children's Hospital to a GI specialist. Since the biopsy came back normal that was all the testing that was done. So I just went on with life and let him continue eating his bread. I don't like the fact that he continues to just want bread. I know there is a problem and feel the bread eating is his way of trying to make himself feel better. I have recently tried taking him off gluten but it has been extremely difficult because he just won't eat much. I guess the purpose of this post is to get advice. I just don't know what to do. Do I just completely get him off the gluten and see what happens or do I go back to our pediatrician and see what else can be done? I just feel so frustrated and just want to cry.

Kim

hi, my son is exactly like you say about eating only carbs. loves bread.. we are doing the testing now. he has poop issues also. but he iss o picky on his food. I started him on the gluten free diet yesterday. which i know is going to be hard. I tried the bread.(he did not like so much) . If you get this reply email me at gspoongrl@aol.com . I know no one like my son. and i to am very frusterated.

michelle


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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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